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Scleroderma and Multiple Sclerosis (MS) Overlap


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#1 barefut

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Posted 05 June 2009 - 05:37 PM

I would love to hear from anyone diagnosed with this particular overlap.

Thanks,

#2 jefa

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Posted 05 June 2009 - 07:16 PM

Have you been diagnosed with this Barefut, or just concerned about the possibility?
Warm wishes,
Jefa

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#3 barefut

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Posted 05 June 2009 - 11:27 PM

I am concerned for myself. These days it seems I have more multiple sclerosis (MS) symptoms than scleroderma symptoms and I would like to hear from others who have a diagnosis. It seems that this is a rare overlap?

Specifically, I would like to know more about people's symptoms and how they differentiate them from sclero? What are the qualities of their pain? Where is the pain? What symptoms besides pain? How was their diagnoses made and how long did it take to get it? What treatments are they getting?

Any insights would be very much appreciated.

Thanks,

#4 Sweet

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Posted 06 June 2009 - 06:55 AM

Goodness, I hope you don't have it. :(
Warm and gentle hugs,

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#5 nan

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Posted 06 June 2009 - 08:21 AM

Interesting that you would bring this up. At my last opthamologist's appointment the doctor mentioned that my left optic nerve was enlarged but not enough yet to warrant any testing. I then asked how long it had been enlarged and I think he said since the last visit. I didn't ask anymore questions because I didn't want to know what it could be. So mature of me. When I got home and looked it up I saw that it can go with glaucoma and MS (multiple scelrosis). I am thinking no way could somebody have scleroderma and MS, but I guess anything is possible. I go back to see my opthamologist in July. I didn't answer your question. I would like to know if anybody on this forum has both.
Take care,
Nan

#6 janey

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Posted 06 June 2009 - 09:30 AM

Serena,
We do have a small section on MS and Scleroderma. Have you checked it out? It only shows one case study and one personal story. After doing a little more research, it's not a common overlap, in fact, it seems rare. Since scleroderma is a connective tissue disease (CTD), it overlaps often with other CTDs which MS is not.

Please get your symptoms checked out by a doctor. We never know what's going on, but shouldn't ignore anything.

Big Hugs.
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#7 jenee

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Posted 06 June 2009 - 11:07 AM

Hi Barefut,

My neighbor has MS the progressive kind :) We shared notes one thing she has that I don't is really bad balance, and neurological problems. She doesn't has raynauds or GI symptoms. She doesn't have the red spots, or puffy hands etc

She also has alot of nerve pain and painful muscle spasms. She also has memory problems and emotionally problems I.e she gets depressed. Getting depressed can happen to anyone with a chronic disease though :) Memory problems can be due to fatigue.

Anyhow, in order to get her diagnosis she had the MRI of her brain plus a lumbar puncture test? Which I believe is what got her the diagnosis, plus here balance is extremely bad, so she failed the neurological balance tests etc.

I would go to a neurologists and have them check you out. That would be you best way to find out if it is MS.


Plus, like Janey said the combo is rare.


Good luck and I hope you feel better :) Warm hug if it is MS that really isn't all that scary either just different.

Jen

#8 debonair susie

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Posted 06 June 2009 - 11:22 AM

barefut,

Exactly! Seeing a neurologist would be quite prudent in this particular case (suspecting MS). The nuero, in the office could question a person and determine if an MRI would be needed, or not.

Keep us posted, if this happens to take place?
Special Hugs,

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#9 barefut

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Posted 06 June 2009 - 05:08 PM

Thanks Everyone,

I have been experiencing a laundry list of MS symptoms and after a scary episode at work of mental confusion followed by throbbing pain in the right side of my neck and pricklys in my left arm, I went to the ER and was sent to Swedish Medical Center in Seattle for the gamut of neruological and vascular tests all of which came back okay. (Whew!) They wanted to rule out mini strokes and they did. The neurologist recommended a sleep study. My family doctor refered me to an ENT and also for the sleep study.

My dizziness has subsided but for months I felt like I was on a boat - and I get seasick. It would come and go in intensity throughout the day and some days I would wake up with vertigo. Between me and my kids being sick, I have gotten a warning at work for having too many absentee occurences which includes going home early, which I had to do a few times because the dizziness and fatigue was so bad I just could not function. I am worried now about losing my job as I have also been 'scolded' for my inattention to detail and memory deficits.

Without trying to sound like I was making excuses, I felt I had to mention my current health issues and I assured them that I am being as proactive as I can in getting these problems resolved as I know they have affected my performance level at work. This is so disturbing to me because I have never ever gotten 'scolded' at any job I have ever held. I have always been the golden girl and now I am the screw up. It does not sit well with me at all!

Kind of off the subject I started with but thanks for listening to that - had to get it out.

Anyway! I am actually kind of excited to have read something about MS that may explain the mystery flank pain I have been having off and on for years. It's called the "MS hug" (nice name for pain...) It is the closest thing I have ever heard described to what I have been experiencing all this time. I actually felt like celebrating when I read about it (weird right?) But you know that feeling when you find out you are not crazy or alone. It feels good.

So, I am actually anxiously awaiting my sleep study because if apnea is the cause of all my problems then I think I will feel like celebrating that too since I know there is safe, effective help for it and I cannot wait to feel better!!!

Thanks again for your support,

#10 Peggy

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Posted 07 June 2009 - 05:08 AM

Barefut -

I'm sorry to hear you are having so many problems right now. I was wondering if you should be considering trying to get social security disability? I'm amazed you are still working! You must really have some long days and to be doing that with everything you have medically going on I really don't know how you do it! I am so thankful that my disability went through so fast as there is now way I could hold down a job. I couldn't be the least bit dependable as I have so many bad days that way outweight the good right now. It's just a thought as at least then you would be able to really take care of yourself and not have to try and work when you feel as bad as you do.

Warm hugs,

Peggy

#11 Kira

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Posted 09 April 2010 - 12:35 PM

Barefut! I hope we have so much less in common then it sounds like!

I realize this is like a year old post, but I'm brand new here and have been reading through the boards. Part of being brand new is being a little shy about talking about my health problems in a way that would clearly ID me to my friends and family who are undoubtedly looking up anything and everything they can about scleroderma. So, if they see this...Hi! :bye:

I have multiple sclerosis (MS) and am in the process of being watched for scleroderma. I looked up "MS" here half hoping to find someone with sclero who could hold my hand in exchange for me holding theirs regarding MS. Pathetic I know. But desperate times....

Anyway...I really hope you do not have MS, but PM me if you somehow see this message (a year later) and just want to say hi to a fellow oddball. I even live in the great northwest and have spent many a day at Swedish. Maybe there is something in the water here?

Oh, and forgive me if you do PM me and it takes me eons to figure out how to retrieve the message! (I'm new!)

#12 barefut

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Posted 09 April 2010 - 03:41 PM

Hi Kira, Welcome!

So weird (timely!) you brought back this post at this time. I may be able to use it to help me with my disability appeal.

Anyway, glad to meet you! I can't believe it's been nearly a year since that post! I am still having the same symptoms and more nerve pain in my feet. For the past couple of weeks I have felt heat on the top of my feet, like someone is holding a blow dryer really close to my foot. It happens once or twice a day for about 5 - 10 seconds - another strange one to add to my list. :wacko:

How long ago were you diagnosed with multiple sclerosis (MS)? I hope it has not been progressing for you. What things do you have to deal with? I know I'm probably grabbing at straws but the 'investigator' in me needs to keep looking for answers to the symptoms I have that aren't fitting into the sclero profile. Not sure an MS diagnoses would make any difference in the treatment I am already receiving for sclero anyway? What is used to treat MS?

I will PM you soon!

#13 susieq40

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Posted 09 April 2010 - 04:22 PM

Dear Barefut and Kira,

This is going to sound weird, but I have Scleroderma and my younger brother was diagnosed with multiple sclerosis (MS). Two separate autoimmune diseases in one family. Not sure how that happened but it's the way it is. My brother has the eye problems, balance, and falling. Leg pain and stress really triggers some of his symptoms.

He also has irritable bowel. Me, I have the reflux, inflammatory bowel disease, born with no gallbladder, and rheumatoid arthirtis, the blue fingers and toes Raynaud's syndrome, memory problems, interstitial lung disease, and pulmonary hypertension. All due to the scleroderma. I've had a catscan of my head/brain when my brother was first diagnosed, because I was having memory problems also, and they found no scars on the brain. Which is really good. so no signs of MS in 2004. I guess I should have that done again....Never hurts to be sure, better safe than sorry. I understand some people probably think we are a bunch of hypocondriac's. But this disease brings a lot of other diseases with it. I'm no doctor, but if you have concerns, get them checked out.

HUGS to All!!!

#14 pinnygig

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Posted 10 April 2010 - 08:30 AM

Wow! Hi Susie q

It looks as though I have Sclero - I certainly have a connective tissue disease (CTD) and the Scl-70 and my younger sister was also diagnosed with multiplel sclerosis (MS) last year - a few months before my 'diagnosis'. Just thought I'd throw it in there! ;)

Pinnygig

#15 Snickerdoodle

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Posted 10 April 2010 - 05:09 PM

Interesting thread. We too, hubby and I have MS & Scleroderma (CREST actually for me). And in studying his symptoms, on an MS board, I found that I experienced much the same things......although, both being autoimmune, I guess that would sound reasonable. I really don't know. I mentioned it to my nurse practitioner at my Pulmonary Hypertension Specialist, and she poo pooed it.

:bye:

#16 Kira

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Posted 10 April 2010 - 05:45 PM

We are a special group of people, I have to say. :blink:

But hearing that there are other special people out there may help me move past the "is this a joke" phase of grief.

And in all seriousness, I'm sorry for everyone's symptoms, and for those that are having to cope with family members who are ill in addition to coping with their own problems.

Barefut, absolute best of luck with your disability appeal. I do not have progressive MS. In fact in the world of MS mine is quite mild. Which is not to say it hasn't been devastating. But I think everyone here would get what I mean by that!

My primary issue is fatigue, for which I am prescribed medication. In terms of treatments there are several injectable medications that effect the actual progression of the disease (all ms progresses). The one I'm supposed to be on slows the disease course by about %10.

I was diagnosed about 12 years ago and it was a very quick process once it became obvious I had neurological problems (rather than just subjective complaints about fatigue). My only other constant unremitting symptom is spasticity, which after two years has calmed down to the point where I need only a small amount of medication to cope with the discomfort.

One of the things I've learned about living with MS (that I SO hope turns out to be true of whatever else I might be diagnosed with) is that if you are persistent and gentle with your body (and really patient), your body will heal and recover to some degree from whatever damage you sustain in an attack. It's not usually a complete recovery, but if I refuse to give up on whatever body function I've lost it usually comes back. But that might just be due to the fact that the brain and spine are capable of re-routing around damaged areas. Sound's sick, but that's my favorite part about MS. It always leaves me room to work around my symptoms. I really hope I reach a similar relationship with whatever this new thing turns out to be.

The symptoms that come and go are the following-tingling, pins and needles, sensations of heat or cold, numbness, mild intentional tremors, balance problems, optic neuritis and (we thought) dysphagia.

I'm really sorry you're having symptoms you can't explain. I know how terrifying that can be. Especially as a mother. I have a young son and while I feel confident about parenting with MS (I have family and friends to support us) the idea of having scleroderma entering my son's life breaks my heart. So, I'm very sorry. If you do indeed have MS, or something like it, and you are having sensory issues (the hot feet) one thing to watch out for is literally overheating yourself. Staying in the tub too long, or having the heat on to high, or going out in the sun will cause pins & needles, & unusual sensations to flare up with MS.

Oh. And stress and fatigue will cause MS symptoms to flare too. But you wouldn't be experiencing those now would you?

Thank you all for being here. I feel like less of a lab rat here, or at the very least like I've found my other fellow lab rats when all along I thought it was just me and my family's dysfunctional genes.

#17 Plowsgal

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Posted 30 July 2016 - 09:38 AM

Barefut, I have been diagnosed with both scleroderma and MS. It has been rather tryng. I have a great support system but still find at times for it to be all very overwhelming. My best advice is to never give up on yourself. Exercise and stay active as much as possible. Sonetimes it is difficult. I stumble more now than ever, run into things alot, and my hand has a mind of its own twisting whenever it sees fit. But I refuse to let these diseases take control of my life. Be strong and always smile.

#18 Joelf

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Posted 30 July 2016 - 07:16 PM

Hi Plowsgal,

Welcome to these forums!

I'm sorry to hear that you have a diagnosis of MS and scleroderma and I'm not surprised that you find it overwhelming at times. It's a good thing that you do have a strong support system around you and also a positive attitude, which does go a long way.

I do hope that you are under the treatment of a listed scleroderma expert as you certainly do require specialist knowledge to deal with such a rare overlap.

I've included a link to our medical pages about Multiple sclerosis and scleroderma which I hope you'll find interesting and informative.

Kind regards,

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